The Pain Management Journey

​Like many other people with Multiple Hereditary Exostoses, I struggle to manage my day to day pain. Forget about the surgeries for a minute…that’s a whole other post.

​Right now, I’m just referring to the bone growths pressing into nerves, muscles, and/or tendons, and the general exhaustion of simply trying to hold my limbs in their proper place. My ankles like to drift inward, thus making my knees touch. I have no muscle strength on the inside of my knees, and those muscles are what keeps your legs “in place”. This creates a variety of issues for not only my knees and ankles, but my hips and spine as well.

When I was younger, I would need what my parents and I referred to as “rest days”. These were days where I spent the entire day in bed, trying to regain strength. On those rest days I mostly relied on Tylenol (that admittedly never worked at all), and hot/cold packs.

Since becoming an adult, I’ve lost my ability to have “rest days,” at least to that degree. Every once in a while, I have to step away from my computer (where I work, writing novels and various articles) and ignore the dishes in the sink to simply lay down on the couch. But those “rest moments” really only last a few moments at best. Kids are demanding, and mine always seem to need something the moment I sit down.

I’ve had to pursue other avenues of pain management. A couple of years ago, I went to a chronic pain clinic and saw a specialist. He asked me how my disability made me feel on a day to day basis and questioned me on how I was managing my pain. At that time, I wasn’t managing it at all. I knew I could easily get prescriptions for Percocet’s, but the few times I’d been prescribed them after surgeries haunted me. Taking opioids works for some people, but for me it made me feel incredibly sick and I would hallucinate. I would get fever-like symptoms and my hands would shake; and it was incredibly difficult on my stomach. In the past, I had also been prescribed Tylenol with codeine and I would experience similar side effects. It destroyed my stomach and made me feel dizzy and disoriented.  

To put it simply: I couldn’t function while taking those pain killers, and as far as I was concerned…it didn’t help improve my quality of life at all. I went from not being able to do things because of the pain, to not being able to do things because I felt too sick to do them.

Prior to visiting this chronic pain specialist, I’d done my research on medical marijuana. Marijuana has been around for centuries, and the noted side effects were far less harsh than the ones for doctor prescribed narcotics. While I don’t really like being “high”, all of the pain killers I’ve ever used made me feel far worse than marijuana does.  

The chronic pain specialist gave me a referral to the Cannabinoid Medical Clinic in Toronto. I didn’t really know what to expect at first, but the doctors and the staff there have been wonderful. I was prescribed Nabilone pills first, and they helped me sleep better at night. The only drawback was the feeling of exhaustion that came with it. I would take it at night and when I woke up in the morning, my eyes would feel so heavy. I couldn’t keep them open, even though my mind was awake. After I expressed this side effect during my second visit, my doctor prescribed me dry herb with a specific THC and CBD content best suited to my particular needs.

Unlike the other pain killers I’ve tried in the past, medical marijuana doesn’t hurt my stomach. If anything, it helps my stomach issues. It improves my appetite and helps ease my anxiety in addition to numbing the pain. I wouldn’t say that medical marijuana completely alleviates all pain symptoms, but it takes the sharpness away and helps with swollen joints and muscles. It helps me relax enough to enjoy whatever’s happening around me.

For example, if I went for a walk and didn’t have medical marijuana beforehand, I would last about five minutes before the ache in my feet, knees, and hips would have me wishing I was back home. This naturally meant that any time I wanted to take the kids to the park or to the zoo or on a hike on the trails, I would be a mess after five minutes in, and we would always have to leave early because of it. But if I did have medical marijuana, it would numb the pain about 70%, which allows me to walk further and enjoy myself more, for a longer period of time.

It’s been roughly a year and half, and I’ve noticed a vast improvement in my pain levels when I take my medicine. I save the Nabilone pills for bad pain days (on account of the fact that they make my eyes feel as if they’re glued shut), but I use the dry herb during the day and in the evening as needed. Naturally, I’m safe about it: I don’t take it when I need to drive, and I’m also kind of weird about doing it when my kids are around. Probably because there is still a stigma of medical marijuana, especially when people see you “smoking” it. When my kids get a little older I will definitely have this conversation with them, but for now I try and smoke it discreetly.

I had another appointment yesterday, and my doctor and I decided that cannabis oil might be beneficial to me at this point. Instead of trying to discreetly smoke the dry herb away from my kid’s prying eyes, I could put a drop of the oil in my morning tea or coffee, or directly on my tongue.

I haven’t tried it yet, and who knows…maybe it won’t have the same affect that the dry herb has with numbing my pain (and my anxiety – DOUBLE SCORE), but once I’ve actually tried it, I’ll be sure to give you all an update.

Medical marijuana may not work for everyone, but it works for me, and at the end of the day you really have to do what works for you. When figuring out how to manage your own pain, just remember to keep an open mind. Don’t count out something just because someone else had a bad experience with it; we’re all built differently and different types of medications will affect us all differently.